Recommended Posts

Tuesday the oncologist called to tell me that I have Chronic Lymphocytic Leukemia or CLL. It was found during my annual physical. He says it is slow and many people live quite awhile. I am much younger than most patients are when they are diagnosed. The 5 year survival rate is 83%. The average life expectancy is 12 years for someone my age (56). My wife isn't taking it real well and my older kids mother died of cancer at age 31. I haven't told my four children or the rest of my family. There are a number of new treatments and reasons to be hopeful. Probably the hardest part of all of it is the unknown. I am not the most well known person around here. I read much more than I ever contribute. Partially out of time commitments. I have been in the bishopric for a year now. Lots of things might be changing. Thanks for listening.

10

Share this post

Link to post

That is hard. You come across in your posts as a sensible, intelligent, capable, and loving person (even here you are sharing info and not complaining), so I anticipate you will handle things well, but I think at times it would be so nice if the world was constructed with less opportunities for us to demonstrate our coping skills.

Share this post

Link to post

Tuesday the oncologist called to tell me that I have Chronic Lymphocytic Leukemia﻿ or CLL. It was found during my annual physical. He says it is slow and many people live quite awhile. I am much younger than most patients are when they are diagnosed. The 5 year survival rate is 83%. The average life expectancy is 12 years for someone my age (56). My wife isn't taking it real well and my older kids mother died of cancer at age 31. I haven't told my four children or the rest of my family. There are a number of new treatments and reasons to be hopeful. Probably the hardest part of all of it is the unknown. I am not the most well known person around here. I read much more than I ever contribute. Partially out of time commitments. I have been in the bishopric for a year now. Lots of things might be changing. Thanks for listening.

Ugh. So sorry to hear this. I would gather all of the most current information before telling your children and present the best case scenario to them when you are ready. I know a little bit about this disease and I think you have every reason to believe that you still have 20 good years (or more) ahead of you with the advances we've seen in medicine. There will be plenty of challenges for sure but like you said, lots of reasons to be hopeful. One day at a time. <3

4

Share this post

Link to post

I am so sorry to hear this also...in this light though...follow your best instincts. This is a chance to tip the scales of priorities in life, love and laughter. My prayers are with you that you will have many more enjoyable and engaging years of the best in life. You can be strong...but do not deprive those that love you the gift of seeing you through these times. God Bless You!

Share this post

Link to post

I know where you are at and hope and pray that all works well for you, both your emotional health and the treatments that you will need to undergo. Keeping a positive attitude, a cliche I know, is really important. I wish I could do more than best wishes, but it is really in the hands of your medical team, God, and you...your faith. That last was what sustained me and which still sustains me.

Share this post

Link to post

Tuesday the oncologist called to tell me that I have Chronic Lymphocytic Leukemia or CLL. It was found during my annual physical. He says it is slow and many people live quite awhile. I am much younger than most patients are when they are diagnosed. The 5 year survival rate is 83%. The average life expectancy is 12 years for someone my age (56). My wife isn't taking it real well and my older kids mother died of cancer at age 31. I haven't told my four children or the rest of my family. There are a number of new treatments and reasons to be hopeful. Probably the hardest part of all of it is the unknown. I am not the most well known person around here. I read much more than I ever contribute. Partially out of time commitments. I have been in the bishopric for a year now. Lots of things might be changing. Thanks for listening. ﻿

Greetings!

First, I am very sorry to hear about your diagnosis. I will keep you in my prayers.

Second, I don't know if this will make you feel better or not (and my wife hates it when I make statistical observations to try to help others feel better), but 5 year survival rates are simply how many people who get a type of cancer are still alive after five years. The 17% are those who have died from any cause, not just cancer - so a person who was diagnosed with cancer and then died of a heart attack within five years would be counted in the 17% of those who did not survive.

Now, given that your cancer is primarily diagnosed in much older individuals, that 83% may be skewed low because of older individuals being diagnosed with the cancer and then dying from other causes (e.g., old age, heart disease, etc.) Basically, the odds of beating this cancer are higher - probably much higher - than 83%. So, it seems to me your chances are at least 90%, if not much higher, of being just fine. I agree with @katherine the great - you have every reason to expect many years ahead.

Anyhow, I don't know if this helps make you feel better, but is more of a reason to be hopeful.

Edited November 11, 2018 by Waylon

Share this post

Link to post

Tuesday the oncologist called to tell me that I have Chronic Lymphocytic Leukemia or CLL. It was found during my annual physical. He says it is slow and many people live quite awhile. I am much younger than most patients are when they are diagnosed. The 5 year survival rate is 83%. The average life expectancy is 12 years for someone my age (56). My wife isn't taking it real well and my older kids mother died of cancer at age 31. I haven't told my four children or the rest of my family. There are a number of new treatments and reasons to be hopeful. Probably the hardest part of all of it is the unknown. I am not the most well known person around here. I read much more than I ever contribute. Partially out of time commitments. I have been in the bishopric for a year now. Lots of things might be changing. Thanks for listening.

My wife mom has CLL. She also got thyroid cancer around the same time so she got a double portion of "fun". Thankfully both conditions are among the "best" cancers if one is going to get cancers. It could be a lot worse. CLL patients do live quite long considering their condition. My wife mom is doing pretty well. She had the thyroid removed. She gets check up regularly and occasionally goes in for some minor treatments for both. She has had it for several years and nothing to suggest that she will not go on for another 5 or 10 years or more. She has had no long treatments in the hospital and I don't even think she has had any chemo. She is still working full time, preparing for retirement and has plenty of things to look forward to. So it does suck. You may be more tired and may be more prone to infection even though you will have a higher WBC count and other things but look at the glass half full. There is a good chance you will live beyond 12 years and those 12 years will be years of ok health considering the situation. Keep in mind as well as medical advances are moving faster today than ever. ALL used to be a pretty bad diagnosis in kids. It is still pretty serious but the survival and cure rates have increased significantly over the past couple of decades. Just tell your kids that you are going to be around for a while because you are. In many older people, they die of conditions unrelated to the CLL before the CLL finally gets them.

Edited November 11, 2018 by carbon dioxide

Share this post

Link to post

Thanks every one. Didn’t think about it too much today, so it was a good day. Right now I am not planning on telling my children for a bit. We will see any of that changes. There are some good treatments coming out and if my chromosome studies are not aggressive, I may not need treatment for awhile.

3

Share this post

Link to post

Thanks every one. Didn’t think about it too much today, so it was a good day. Right now I am not planning on telling my children for a bit. We will see any of that changes. There are some good treatments coming out and if my chromosome studies are not aggressive, I may not need treatment for awhile.

I hope you don't take this wrong, if you've paid attention to some threads you may think I'm a nut, but I've read good things about CBD oil for cancer, if you can try that in the meantime.

Thanks every one. Didn’t think about it too much today, so it was a good day. Right now I am not planning on telling my children for a bit. We will see any of that changes. There are some good treatments coming out and if my chromosome studies are not aggressive, I may not need treatment for awhile.

Hello reads...

I join others here in encouraging you... and I agree there is every reason to be positive about advancements and treatments in the future... and here's the thing, now you can seriously help your situation by entering into a regimen of healthy eating, exercising, weight control... i.e., doing everything you can to strengthen your body and it will strengthen you mentally also... good luck to you... and you'll be in my prayers also... don't forget to place your name on the temple prayer roll.

GG

Share this post

Link to post

Tuesday the oncologist called to tell me that I have Chronic Lymphocytic Leukemia or CLL. It was found during my annual physical. He says it is slow and many people live quite awhile. I am much younger than most patients are when they are diagnosed. The 5 year survival rate is 83%. The average life expectancy is 12 years for someone my age (56). My wife isn't taking it real well and my older kids mother died of cancer at age 31. I haven't told my four children or the rest of my family. There are a number of new treatments and reasons to be hopeful. Probably the hardest part of all of it is the unknown. I am not the most well known person around here. I read much more than I ever contribute. Partially out of time commitments. I have been in the bishopric for a year now. Lots of things might be changing. Thanks for listening.

Sure lots of things may be changing.... but you decide that. I too have been diagnosed with non Hodgkins lymphoma, follicular and extranodal, stage 4 because it's in my bone marrow. My prognosis is not good. There is no cure and i have refused the chemo treatments. I may have 2 or 3 years. I'm 64 years old. I just found out last April. Just before my diagnosis, I was called to serve as Elders Quorum First Counselor. I was concerned about my calling because I think that the elders quorum should have strong and dependable leadership. I went to my stake president with the news but he reassured me that the Lord will give me the strength that I need. Keep your faith in front of you my brother. God loves you. He sent his spirit as a comforter.

Share this post

Link to post

Been pretty busy. I don’t seem to have as much energy and right now I am not being treated. It seems like I am stable, but immunosuppressed. I haven’t told anybody in my ward or my children. The same with my business partners. Not sure I will. When I hear someone had a birthday I wonder if I will live as long as them. I have been to the oncologist about three times. There are doctors that treat only my kind of cancer, so I may be going to Mayo or U of U.

Its nice to know anyone is thinking about me. In my support group I seem to be kind of boring compared to most, so that is probably good. Yes God has been with me.

3

Share this post

Link to post

Been pretty busy. I don’t seem to have as much energy and right now I am not being treated. It seems like I am stable, but immunosuppressed. I haven’t told anybody in my ward or my children. The same with my business partners. Not sure I will. When I hear someone had a birthday I wonder if I will live as long as them. I have been to the oncologist about three times. There are doctors that treat only my kind of cancer, so I may be going to Mayo or U of U.

Its nice to know anyone is thinking about me. In my support group I seem to be kind of boring compared to most, so that is probably good. Yes God has been with me.

One cancer survivor to another:

I understand your initial desire to have a “stiff upper lip” and keep this quiet; but when it happened to me a couple of years ago, I soon realized that I could not go through the experience without telling everyone I love “the truth”—including my Bishop, my children, my siblings, my boss, my colleagues, and all of my friends. Staying quiet created a kind of dysfunction in all of my relationships that I did not need while I was working so hard to be healed.

And when my Bishop asked for permission to include our entire ward in a fast on my behalf, we humbly consented and invited all of our family and friends (even the non-believers) to join us. It proved to be a sanctifying experience that changed us in ways we had never imagined. (C.S. Lewis was right!)

IMHO, you should not exclude anyone you love from that opportunity.

2

Share this post

Link to post

I would love to talk to others and I understand that you have been there. My cancer may be a little different. I may not be on treatment for several years. My life expectancy is about 12 years. My oncologist thinks that should be longer with new treatments. I have to be careful to not get sick because I don't make as many antibodies, even if I am not on chemotherapy. Lots of hand sanitizer. Most of the new treatments for chronic lymphocytic leukemia are now oral agents that are not as immunosuppressive, but cost about 14,000 a month. The few people that I have told do treat you differently when they find out. Its that look and being treated like I am going to die tomorrow.

3

Share this post

Link to post

You’re right. Our medical conditions are a bit different, and I can see better now where you’re coming from. It’s a difficult choice in either case: to share or not to share; to be seen by others one way, or to be seen another way. If I were in your shoes, I can see myself approaching disclosure exactly as you have.

I am praying for you. This is no “ordinary” challenge. It hurts when He starts converting our nice little cottages into His palaces.

1

Share this post

Link to post

Been pretty busy. I don’t seem to have as much energy and right now I am not being treated. It seems like I am stable, but immunosuppressed. I haven’t told anybody in my ward or my children. The same with my business partners. Not sure I will. When I hear someone had a birthday I wonder if I will live as long as them. I have been to the oncologist about three times. There are doctors that treat only my kind of cancer, so I may be going to Mayo or U of U.

Its nice to know anyone is thinking about me. In my support group I seem to be kind of boring compared to most, so that is probably good. Yes God has been with me.